The first child always tests the bonds of a relationship, and having a severely disabled child multiplies the stress exponentially. The stress eased a bit once we settled in with Nick at home. As an infant, he was like any other baby in diapers and unable to feed himself, so that gave us a quieter period of adjustment. We embraced the normalcy and basked in it. Eventually Dushka and I poked fun at ourselves at the idea of us being perfectly suited to raise Nick. It became a running joke, usually dipped in irony whenever we hit a particularly rough time or encountered a big challenge. We’d say, “This could not have happened to a better couple.”
Usually we’d laugh, but often the feeling was bittersweet. Every parent with a special-needs child will tell you that it is an emotional roller coaster. The stress can batter a marriage into numbness. It can drive couples apart. Yet there is also the opportunity to strengthen bonds so they are resilient and strong enough to hold through any challenge and last a lifetime.
SIX STRATEGIES FOR A MARRIAGE UNDER STRESS
When Dushka and I reflect on how we held our relationship together through the challenges of raising Nick and our other children, we can identify a few things that were helpful. There is no guarantee, of course, that they will work for everyone. I’ve noted before that many parents with disabled and special-needs kids face far greater challenges than we dealt with in raising Nick. We stand in awe of the incredible strength, patience, and heroic efforts of those whose children have more severe physical or mental disabilities. That said, it’s probably true that these suggestions can bring some benefits for any couple dealing with stressful parenting situations.
I can’t say that we consciously did most of these things, and we certainly had lapses from time to time in sticking with them. Life has a way of distracting you from your best intentions. I’ve had to reflect on what worked and didn’t work to identify each of them. Honestly, most simply came to us after a lot of trial-and-error experiences. Whenever we found something that worked, we stuck with it and tried to be consistent. You may find some of these helpful in your own efforts to keep the relationship bonds strong while facing parenting challenges of your own.
Our relationship while parenting Nick benefitted from these strategies:
1. Developing a Team Nick approach in which we each took on specific roles while sharing responsibilities and supporting each other.
2. Trying to be flexible and adaptable in our parenting roles.
3. Doing our best to always communicate feelings and concerns before problems could occur.
4. Keeping in mind why we married in the first place and taking time to refresh and build upon our bonds.
5. Making the most of all available resources, including family, friends, and ministers; local, state, and federal agencies; professional therapists; support groups; and reliable online sites.
6. Remembering to be grateful and to laugh whenever possible to lighten the load.
Let’s look at each of these methods individually.
1. Team Nick
When a child has special needs, parents can easily feel overwhelmed by even the routine daily care required. Stress only increases if they dwell on the unanswerable what-ifs of the future and the challenges awaiting the child in adulthood. Parents easily can fall into despair and depression unless they support each other, take things as they come, do only what can be done, and remain focused on solutions rather than problems.
Every marriage and strong relationship requires a degree of selflessness, giving up the “me” to the “we.” Nick’s disabilities made it necessary to take it a step further, giving up the “we” for the “us.” We became Team Nick, focused on his care and development, but we also did our best to stay close as a couple by spending time together and sharing our feelings.
This situation changed over time, of course, and that is an important point for parents of newborns or young children to keep in mind. Your first years are generally the most difficult because of all the emotional issues, as well as the difficult learning curve and the impact on your lifestyle. Take heart in the fact that as you settle into a routine and a more normal day-to-day existence, the stress will generally subside. You will get better at parenting your child. Don’t feel like you have to be perfect or know exactly what to do all the time. Be as patient with yourself and with your spouse as you are with your child.
Working Together
When Dushka became pregnant after five years of marriage, we knew we were in for some major changes, but we had not factored in the impact of a child without limbs. If either of us had remained for long in the initial wave of self-pity and victimization, our relationship might have disintegrated. That didn’t happen, in part because we both came from immigrant backgrounds. Our parents and grandparents had struggled mightily and endured great hardships. They had no tolerance for weakness. They made it clear from the beginning that they were on Team Nick, and so it began.
They fortified us. Dushka and I came together and worked as partners with shared goals. We supported each other in caring for our son and dealing with medical specialists, equipment, expenses, therapies, insurance, and schooling. We adjusted our careers and our work schedules so that one of us was always with Nick in his early years of dependence.
Our similar economic backgrounds were a benefit. We were from low-income families and accustomed to life in the slow lane. Dushka did not demand a McMansion. I was okay with driving an economy car. We had always lived within our limited means, and when Nick came along, those limits tightened. Our pie had only so many pieces. Nick’s needs became our shared priority.
Selflessness can sometimes seem like a lost concept in a world inundated with selfies, but putting your child and your spouse above yourself is the best way to keep your family united and strong. Christians are called upon to be the light of the world and to look to Jesus, who was willing to give His life for our sins, as a moral guide. He told us to love others as we love ourselves. If all humanity embraced this principle, the world would be a much better and safer place. But at the very least we can apply this principle to our children and to our spouses as well.
Dushka and I may never have achieved complete selflessness when we formed Team Nick, but striving to serve each other first helped us to stay strong in our efforts to give our son all that he needed.
Our family team expanded to include Aaron and Michelle when they arrived, and Nick joined in as we supported and helped each other. We were not the ideal family by any means. We were and remain imperfect. Yet we are united as a family, supportive of each other, and ready to help out when needed, just as my parents and grandparents helped us with Nick. This family tradition of serving others will live on with our three children, all of whom have giving hearts, and my wife and I are grateful to see them sharing their gifts and making a difference.
2. Parenting Without Borders
To reduce conflict as we dealt with the stress of raising a disabled child, Dushka and I had to let go of any traditional concepts we had about the parenting role of the father and the parenting role of the mother. In other words, we had to become parents without borders.
This wasn’t all that difficult for us because we’d both been working outside the home, so we were already accustomed to sharing the load when it came to housework, shopping, and meals. When Nick came along, we created a new routine of shared responsibilities, although Dushka definitely was the authority on matters of health and childcare. I never knew why he was crying. She always did.
We learned quickly that caring for Nick required us both to pitch in and do whatever was necessary to keep him safe, healthy, and in the best possible environment. I could not be the traditional old-school father like my father and father-in-law who worked nine to five and expected their wives to serve them meals, do the laundry, and keep the house clean without assistance from them. Dushka could not stick with her full-time job of working as a nurse and midwife while a nanny or day-care center or family member looked after baby Nick.
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e both had to toss out those expectations and adjust to parenting Nick in shifts, being flexible in our roles and supporting each other. The need for this became most obvious when Nick came home from the hospital with colic. Later, long after Nick was over the colic, Dushka worked part-time on the night shift at a hospital, so we again had to be flexible in our parenting roles. This wasn’t easy, but there was no other way to make it work. We needed Dushka’s income to help with the mortgage, as well as living, medical, and other expenses, and our son needed someone with him at all times. So we supported each other and did what we had to do.
Once all the kids were out of diapers, Dushka went back to working full time on rotating shifts. It was tough on her and not great for the kids, although we had support from our parents. We realized, however, that it didn’t make sense, even financially, for her to be working so hard outside the home. When we looked at our taxes, we determined that if she cut back to working four days a week, it wouldn’t affect our after-tax income that much because the lost income would leave us in a lower tax bracket.
So she changed her schedule to a four-day workweek, which reduced her stress and gave her more time with the kids. Dushka loved nursing, and she could have continued her full-time career if we’d asked our parents to help out more or hired sitters. Instead, she made the kids her priority. We cut back on expenditures and our lifestyle so that Nick, as well as Aaron and Michelle, would have her around more.
In the same way, when Nick was born I stopped pursuing an accounting degree so I could help out in his first few years. Later I went back to school while also working full time so I could get that degree and a better job. We both made adjustments. We had to be flexible. If either of us had refused to make those adjustments, I’m sure there would have been conflicts and turmoil in our relationship.
Playing to Your Strengths
Parenting without borders also means making the most of each partner’s strengths without regard to traditional husband and wife roles. If, for example, the wife is a certified public accountant and the husband has to travel all the time, it makes more sense for her to manage the family’s finances. In our case, Dushka had an abundance of medical training and experience so she became Nick’s chief advocate in that department. I let her handle those things and gave her assistance when she needed me. Major decisions were shared, of course, but often I deferred to her expertise.
It would have been foolish for me, and potentially harmful for Nick, if I insisted that I was “the man of the house” and tried to overrule her in medical matters. We found a balance in our parenting roles that wasn’t based on ego or gender but on need and our individual strengths.
3. Talking It Out
As with any relationship that is under stress, communication is essential for parents of special-needs children. If something is bothering you, expressing it right away will help ensure that the issue doesn’t cause a meltdown. There is a real temptation to blame your spouse when something goes wrong, but that generally leads only to more conflict. It does no good to lay blame. It’s far more important—and healing—to talk it through, come to an agreement on a solution, and then work together to implement it.
Dushka and I find that the longer we’re together, the more we can communicate and resolve problems without a lot of discussion. We just know each other so well after nearly forty years of marriage. In our early days together, we learned to talk through issues because so many important decisions had to be made regarding Nick’s medical care, his education, our schedules at home and at work, and our bills and budgets. We also moved quite a bit, and that is always a stressful thing that requires extensive planning, adjustments, and coordination.
Faith-Healing Debate
Perhaps our biggest conflict in those early years with Nick was about an issue related to our faith, which was unusual because we both grew up in the same church and we are equally yoked in the commitment we have to our Christian beliefs. I wouldn’t say this issue ever threatened our marriage, but we did have intense discussions about it because we both had strong feelings. This is also a matter of debate among other families with disabled children.
From Nick’s birth we all prayed and fasted, asking God for a miracle that would give him limbs. When those prayers were not answered, we wondered if it was because our faith was lacking or if God had another plan yet unrevealed.
We believed in God’s healing power, and that led to discussions on whether we should look to churches and ministers who were believed to be conduits of that power. Our own church did not offer that. My position was that if God wanted to give our son limbs, He could and would do it irrespective of the place or church affiliation and without relying on an earthly intermediary. Dushka believed it couldn’t hurt to try to find a healer anywhere we could. She made a strong argument on several occasions that I wasn’t being open minded and that we could be missing opportunities that would benefit Nick enormously.
Faith healing—also known as divine healing, miracle healing, and supernatural healing—has long been a controversy among Christians and other religions. It has split churches and driven believers from one denomination to another. Some believe in faith healing, others hold that only God can perform miracles, and still others are of the mind that miracles on earth ended with the passing of the original apostles.
The Bible has accounts of healings performed by Jesus as well as by Elijah, the apostle Paul, and many others. The Bible says Jesus sometimes refused to perform miraculous healing because He felt the individuals lacked faith in Him and He didn’t want to impose it upon them.
Some faiths don’t endorse faith healing but do believe in the power of prayer as a healing source in modern times. Others believe that God will heal people through ministers in ceremonies involving the laying of hands on disabled or sick individuals. Dushka and I had many discussions on this topic during Nick’s childhood.
I understood that she was acting out of a mother’s love for her son. I loved Nick too, but I was not comfortable hopping from one church to the other in hopes of finding a miracle. My wife and others in our family who supported her in this were willing to try for Nick’s sake. “How do you know it won’t work if you don’t take him and try it?” she asked.
Again, I believed that if God’s plan was to perform a miracle to heal Nick, He would do it at any place. When Jesus talked with the Samaritan woman at the well, she asked if it was better to worship in Jerusalem or at the mountain. Jesus said the time had come for true believers to pray and worship in every place. He also said when we pray, we are not to make a spectacle of it to draw the attention of people but rather to pray in private behind closed doors. Jesus added that the Father who sees what is done in secret will reward us.
I believe that God can answer our prayers anywhere we are. He is not bound by time and space, and He does not need an intermediary. It didn’t help my position that we often had people saying they knew of other churches or missions abroad where miracle healings were occurring.
There were a few faith-healing ministries on television at the time, which caught Dushka’s attention with their claims. I contended that God’s power was not a media spectacle. He is not about making a show of His healing and forgiveness.
As an adult, Nick has traveled throughout the world. He has been prayed for by many who would like to see him with arms and legs, yet he remains without limbs. Even so, he has found a life of purpose.
Spiritual Healing Comes First
Within a few years, I came to believe strongly that we needed to come to terms with the reality of Nick’s disabilities and move on. If God decided to heal him, He would do it on His schedule, not ours. I also saw that there was such need in the world and so many others who lacked limbs or had lost them. How could God choose to heal only Nick when so many others had physical problems like his or far worse?
We tend to forget that God is more concerned about our spiritual well-being than our physical health. This is illustrated in Scripture when Jesus was visiting
a home and a crowd surrounded it. Some friends brought a crippled man on a mat to be healed, and the only way they could get him to Jesus was to lower him through an opening in the roof.
The first thing Jesus did was to tell the man his sins were forgiven. In the mind of Jesus, that was the greatest gift He could give because it meant this man had the opportunity to spend eternity in heaven. When some of those present questioned Him, Jesus said, “Which is easier: to say to this paralyzed man, ‘Your sins are forgiven,’ or to say, ‘Get up, take your mat and walk’? But I want you to know that the Son of Man has authority on earth to forgive sins.” Only then did Jesus say to the crippled man, “Get up, take your mat and go home.” The man did as commanded, walking away while everyone watched.
This is why I believe God considers spiritual healing more important than physical healing, and I thought we should give Him time to reveal His plans for Nick without relying on faith healers.
In those early years of Nick’s life, I sometimes had strangers come up to me when I was with him and say, “One day God will make him whole.” Things like that did not easily sway me. I’m skeptical of faith-healing claims, but I am a believer in God’s power. I believe if God wants Nick to have arms and legs, He will provide them one day.
This debate went on for Nick’s first couple of years. I respected Dushka’s position as a mother who desperately wanted her son to have an easier life. I just thought God would reveal His plan for Nick on His own schedule, and I didn’t want to put him or us through the disappointment of going to many supposed healing places and subjecting Nick to people with their own agendas and motives for promoting themselves as healers.
Raising the Perfectly Imperfect Child Page 16